


Blue

by FawnoftheWoods



Category: Original Work
Genre: Coeliac, Coeliac Disease, Gen, I try to explain how it feels to have CD, Illness, Longterm Illness, Metaphor, celiac, celiac disease
Language: English
Status: Completed
Published: 2018-08-17
Updated: 2018-08-17
Packaged: 2019-06-28 14:27:42
Rating: Not Rated
Warnings: Major Character Death
Chapters: 1
Words: 3,152
Publisher: archiveofourown.org
Story URL: https://archiveofourown.org/works/15709074
Author URL: https://archiveofourown.org/users/FawnoftheWoods/pseuds/FawnoftheWoods
Summary: This is my attempt to explain how I feel having a longterm silent illness to someone who doesn't.  I needed to write this.  I don't necessarily think people will read it, but I've been told its a very understandable, if mildly sad, metaphor that is easy to relate to.





	Blue

**Author's Note:**

> Hi, this is not my usual stuff. If you think it would help anyone else, feel free to repost this. Or to spread the link. At the end of the piece is an explanation of my specific illness. If you think this fits your illness, let me know and I will add an explanation of the medical side of your illness as well.

**There** was a playground.  It was a great playground.  It had a big red slide and yellow swings.  There was a blue seesaw and monkey bars that alternated.  Everything in the playground had been painted red, yellow or blue.  There was a red castle and a yellow bridge. There was a blue stair and red windows.  There was a yellow pole and blue ladder. There was even a giant fortress that had splotches of blue and yellow and red everywhere.  It was the best playground.

At this playground, there was a little girl.  She was new. She walked to the playground everyday to play and walked home as the sun set.  She seemed to be a nice girl so the other children asked her to play. They ran around the playground laughing.  They ran across the yellow bridge and up into the red castle. The girl was fun.

But sometimes the girl was odd.  She didn’t like the ladder or the stair, preferring to climb the slide backwards.  And she never went near the giant fortress. Finally, one of the other children asked her, “Why?”

“I can’t touch the blue.”  was her only reply.

When the children told their parents that later that night, the parents frowned.  The blue dye, like the red and the yellow had always been safe. To be sure though, the parents contacted the city and asked about it.  The city replied that the dyes had been rigorously tested and they were very safe. Occasionally, people were allergic to yellow. Kids would get a red rash from touching the yellow and have to stay home for a day.  But outside this, all the colors were very safe for their children.

The next day, the parents stopped the little girl.

“The blue is very safe.  It has been tested by very smart people.  Its okay.”

The little girl shook her head.

“My Mommy and Daddy told me not to touch the blue.  All playgrounds use this blue so I just have to not touch it and I can play in the playground.”

The parents were very concerned that the little girl thought nothing was wrong with this.  But the little girl smiled and hurried into the game of tag.

The parents decided that as long as no one was hurt by the little girl, everything would be all right and they settled to watch the children play.  There was one boy who was allergic to the yellow. If he touched it, his hand would turn very red and his head would hurt. His breathing would get harsh and he would have to stay in bed several days.  His parents sometimes worried he touched it because it was fun and thus worth the pain.

This little boy and the little girl became friends.  They stayed on the all red slide and the red castle. Never while the little boy was playing did the little girl wander onto something with yellow out of respect for the little boy.  A very admirable and well behaved child, the parents agreed. Occasionally the little boy would play on something that was blue and his new friend would wait patiently on something else.  The little boy would say that it wasn’t fair to limit himself even further than he already was. The little girl would shrug and smile.

One day they were playing a game and the little girl tripped and grabbed the blue railing.  The parents jumped to their feet, but the little girl didn’t notice her mistake and kept going.  The parents watched her run after her friend, laughing. She looked fine.

The next day, the little girl returned to the playground looking fine too.  The parents talked. The little girl must be imagining it and her parents are indulging her.  If she thinks blue will make her ill, then naturally she’d feel unwell when she knows she’d made contact with blue.  As opposed to the child who was allergic to yellow.

The parents asked their children if the little girl had ever said she felt bad, but she hadn’t.  The parents explained that the little girl was probably confused. She simply thought that blue would make her feel bad.  As long as she didn’t know it wouldn’t harm her. That made sense.

The kids played blind tag the next day.  Someone would be blindfolded and try to catch someone else.  When the little girl was blindfolded, she tried to catch the other kids, but they were much faster than she was.  Eventually she cornered one of the kids at the base of the giant fortress. By the time her blindfold was off she was running away again.

The parents saw that she had fell against the blue paint.  It had rubbed off on her skin like the yellow and red did. She seemed okay.

Gradually, the other children tried to convince the little girl that blue wasn’t bad.  They would show her that they were not hurt. They even spoke of the few times she’d touch the blue and she remained unhurt.  She simply shook her head and insisted that blue was bad for her.

Slowly, the other children stopped inviting her to play the games.  She couldn’t play game where she couldn’t see anymore because she might accidentally hit the blue.  She couldn’t go on the seesaw or the ladders and she refused to even touch the giant fortress. Even the little boy who couldn’t touch yellow, stopped playing with her on all red equipment.

One day a new kid asked her to play blind tag with them.  He hadn’t played in a long time and everyone was looking at her, asking her to play so she agreed.  The parents smiled as the little girl appeared finally ready to put this all behind her. The little girl laughed and played all day.  Then she tripped.

She stumbled onto the blue seesaw, which shifted alarmingly.  The little girl immediately froze. The parents were already on their feet to help her, after all the seesaw could be alarming if you’d never been on it before.  But before they got to her, she rolled off and lay on the ground.

* * *

All the kids were having such fun.  She had searched the entire area and this playground had the least blue.  Still there was a lot of it. But there were swings and a slide. She liked slides.  She thought back over the other playgrounds she’d seen. There was one with a merry-go-round that was yellow.  But all its steps were blue. This was the best playground she could use. She sighed and pasted on her best smile.  She’d promised Mommy she’d be fine and have fun.

She ran around the slide.  The monkey bars were a challenge, since they alternated red, blue and yellow, but she hopped the blue ones.  And it wasn’t that far to fall when she couldn’t make it. The other kids seemed nice. It was only an hour walk.  Well worth it.

Eventually she started playing with the other kids.  They particularly liked tag. Sometimes they would play on the stuff that had blue on it and she couldn’t follow. Eventually one of them asked what she’s always asked, “Why?”.

“I can’t touch the blue.”  Her parents and the nice doctor had been very stern about this.  No blue. The other kids thought it was odd, but eventually playing was more interesting anyway.  She liked playing with them when they were on the things she could touch. Or just running around in the grass.

She was glad the kids stopped asking her questions about the blue thing.  She didn’t want to think about it. She had to think about not touching the blue, but she wanted to think about how to escape the person who was it and whether the swings could go higher before she jumped off.  She didn’t want to think about not touching blue.

One day the other Mommys and Daddys who were always there came over to talk.  

“The blue is very safe.  It has been tested by very smart people.  Its okay.” They told her.

The little girl shook her head.  She knew they were wrong. It was safe for everyone else, but not for her.

“My Mommy and Daddy told me not to touch the blue.  All playground use this blue so I just have to not touch it and I can play in the playground.”  That had taken a lot of convincing by itself. Her hands had shaken and everything, but she wanted to play.

She didn’t want to think about what the doctor had told her parents when she wasn’t supposed to hear.

One day, a boy came who couldn’t touch the yellow.  She was happy to play with him. She made sure they never went near the yellow so he could focus on playing and not on not touching yellow.  Yellow was pretty and in this playground that meant no swings. She knew that sucked. They played together and she told him she couldn’t touch blue.

When she said that, she could hear the other kids whisper.  She didn’t look at them. She didn’t want to see them look at her, like she wasn’t a kid, couldn’t play.  She just wanted to slide down the slide with her new friend.

It didn’t last though.  The friend wanted to play on the seesaw.  She watched as he climbed the ladder. The only time he played with her was when the rest of the kids were on the giant fortress.  Neither of them could go there. One day he accidentally touched some yellow when some of the kids were roughhousing. His skin turned really red and all the other parents hurried to him.  He was gone a few days.

When he came back she asked if he was all right.  He told her that as long as he rested and took his medicine he was perfectly fine, until the next time he touched yellow.  She breathed a sigh of relief! She had worried that his was like hers. But he was okay now. That was good.

Except, he wasn’t like her now.  She was alone.

Occasionally she played the games with everyone else still.  Blind folding made her nervous, but the game was fun and she had played it alot before she was sick.  She never saw the blue mixed in with the red and yellow rubbed onto her shoulders. The Mommys and Daddys told her Mommy and Daddy that they were always there to watch everyone.  They would keep her safe.

But that wasn’t true.  The others told her the blue didn’t hurt them.  Then they told her that the blue didn’t hurt her.  She’d touched blue before and it didn’t hurt when she couldn’t see.  They said their Mommy or Daddy said she was making it up and as long as she didn’t know she was touching the blue, it was fine.

She knew they were wrong.

She had heard the doctor.  Mommy and Daddy didn’t want to tell her until she was older.  They said she should know when she turned 12. That was forever away.

She wished she had waited.

She stopped accepting games where she couldn’t see and they stopped inviting her.  She played on the slide by herself. She sat on the swing with no one to urge her to swing higher.  No one to beat jumping off.

One day a new kid asked her to join them in blind tag again.  She knew she should shake her head. She knew she should not get blind folded.  The Mommys and Daddys here wouldn’t protect her. She never told her Mommy or Daddy because then she couldn’t come here.  She was big enough to protect herself. But without being able to see, she couldn’t do that. And only her Mommy and Daddy would protect her.

But everyone wanted her to play.  She wanted to play. The new boy had been nice to her and he really wanted her to play.  She glanced at the blue ladder and seesaw and nodded.

It was really fun!  She always loved this game.  And she had been it twice already and they had stayed on the grass.  Everything was good.

She was following the giggling, this new boy could not stop giggling.  It made him easy to find. She felt herself trip and reached out to grab the grass.  She didn’t want her face to hurt.

She felt the hard plastic.  It wasn’t grass. She should get up.  She should take her blindfold off, because this felt like the seesaw and what her doctor said floated through her mind.  But she couldn’t get up. She pushed and pushed but eventually she fell. She fell and she was afraid.

_The blue dye will soak through her skin and replace her blood.  We cannot remove it._

She didn’t want the blue in her.  She was falling and she was afraid.

* * *

The ambulance came.  The parents had called 911 immediately.  The children all gathered with several parents in the shelter while two stayed with the child.  One had already left to get the little girl’s parents. The EMT felt for a pulse and began CPR. One mother heard them call for Epinephrine and wondered if the little girl had an Epi-pen like a lot of asthmatics.  One father thought to tell the EMT that the girl said she couldn’t touch the blue.

The mother watched as the EMT nodded distractedly before the information sunk in apparently because he started swearing.  He lifted the little girl onto the stretcher and called for an IV of blood. She watched as the ambulance took off the second the little girl was in, with the EMT still performing CPR.

* * *

Hi Mommy.  Hi Daddy.

Its okay that you weren’t at the hospital.  I didn’t make it there anyway. I saw you at the playground.  The other Mommys and Daddys told you I fell. They said the ambulance took me.  My shoe has your phone number. The hospital didn’t call though. One of the policemen was still at the playground and they took you to the hospital.  But I wasn’t there.

A lot of the other kids came to our house later.  It would have been cool if they had come before. I would have liked to play with them.  We could have played in our house easily. There was no blue in our house. Well, except Star of course.  But we could have played blind tag there and it would have been safe.

The other Mommys and Daddys came too.  They see Star. She is locked behind glass in my room so I didn’t accidentally touch her.  But I loved her. They ask about it. I hear Mommy tell them what the doctor said. Anytime I touched blue, more of my blood was replaced with the dye.  Eventually I just didn’t have enough blood left. My heart couldn’t pump blue, I guess.

Daddy doesn’t talk, he just cries.  I try to give him a hug. He always said that my hugs made crying better.  I gave him a lot of hugs after the doctor told me no more blue. I want to give him one now, but he doesn’t know I’m here.  I love you Daddy! Can that be enough? Will that make crying better?

Mommy doesn’t let the other Mommy take Star out of her case.  I think she’s lonely though. Maybe she can now have a friend who can hug her.  I miss her hugs. She really gave the best hugs. When I was scared because Mommy was late and when I was sad because Grandmama left, Star gave me hugs.  Daddy was right, hugs help. I forgot to tell you that, Daddy. Hugs really do help.

But I can’t hug Star anymore.  I haven’t for a long time.

I see Grandmama next to me.  She’s here to give me a hug so everything is better.  I guess it’ll do. Except I touch Star and you know what, Daddy?  Star came with me. I mean I can see she’s still with you, but she came with me too.  She says that since I love her, she’ll come with me, but she wants to stay to give you hugs.  You need hugs, because you are really sad now.

But its okay, Daddy.  I can hug Star again. Because Star is my bestest friend and my favorite color.

Star is blue.

 

* * *

* * *

* * *

* * *

 

 

Celiac Disease is an autoimmune condition where the partial digestion of gluten and gliadin in wheat, rye, spelt or barley enters the blood stream from the intestines where it elicits an immune response that causes the body to attack the small intestines. This severely **reduces the body's ability to adsorb nutrition** , specifically iron, zinc, Vit B, vit D, calcium, magnesium, and several others. Without these nutrients, organs and muscles have decreased function that continues to deteriorate until intervention or failure.

The scary part of Celiac Disease is actually the diagnosis. There are four types of Celiacs. I am not sure which one is scarier. The most extreme is symptomatic CD. This is the **only** version of celiacs where the patient feels an effect of gluten when its ingested. The person could feel any or all of several things. A skin condition called DH where itchy bumps form on the skin. Several nueropathies, including ataxia where the person loses the ability to control their muscles temporarily. Several dental issues that can also aggravate stomach issues.  And several stomach issues, of course.

The next most common is called asymptomatic CD. In this condition, the damage to the intestine is **still done** , but other than stomach ache and nutritional issues, **no** other symptoms occur. In some ways this is scarier than the more extreme version since it is usually not noticed until the damage to the intestines is great enough to cause multiple hospitalizations and severe lifelong organ problems.

The final two are intermittent. Sometimes gluten caused damage and sometimes it doesn't. This is almost never diagnosed and if the proper conditions occur, this condition could become the other two full versions. We do not currently understand what these conditions are.

The hardest part of this is that the damage **doesn't heal** for most adults, or even children. Each time the person eats gluten they lose more of their ability to adsorb nutrition from food. There are many side effects of this, like eating more to fulfill nutrition requirements. The thing is, with the exception of the symptomatic, we **do not feel or act sick immediately.** We do not go to the hospital or lay in bed sick for a while. In fact, unless I eat a full loaf of bread worth of wheat, I feel fine. So people don't understand how dangerous for us gluten is, because we take years off the other end of our lives. The bill comes due.

**Author's Note:**

> Please pass this on if you think it will help anyone. Let me know if you want to add an explanation to your condition if you think this matches your as well. 
> 
> Thank you for reading


End file.
